I have set up this page because my family asked me to as they wanted to give towards this cause. I said I hadn't when they asked as I feel guilty for repeatedly pestering people so please don't feel obliged.
The FDSS UK have arranged for the world expert in Charlotte's condition to come over from America in October and meet and talk to firstly sufferers and their families and then to hold a medical master class to meet doctors from the UK so they can all learn and work together for research purposes.
FDSS are a group of people who banded together in 2007 who are all affected or have affected family members and is totally funded by donations. They are paying for this to happen and I wanted to contribute anything I could towards it.